Monday, March 31, 2008

And you thought it couldn't get any crazier?

A lot has happened in the last month and I’m not quite sure where to begin. David is doing well but the last couple weeks have been more than a little eventful. It’s strange, it’s been absolutely insane because of the non-stop stuff going on but at least none of it was critical. It was just difficult because there was so much being thrown at us and it was constant.

We had a recurrence of colon issues due to the steroids, an ER visit for continual hiccups for 15 hours, which precipitated nausea and David was unable to keep his meds down. Once it became that critical we went to ER and they gave him a muscle relaxant and sent us on our merry way. We didn’t know what to do; we’ve never been to the ER and then sent home again…I didn’t know how to get out! We ended up right back there in another week for different colon issues, probably due to the muscle relaxants. Lovely. So, David’s GI tract developed an Ileus…basically a sleepy Gastrointestinal Tract. They took him off the muscle relaxant and sent us home again. So, we had a couple scares this month but nothing we couldn’t muddle through and David was home...and that’s what counts.

Inter-mixed throughout all of this, the household had 2 rounds of flu come through. And not just your run of mil flu…this was the crazy nasty flu! Everyone but David got it. We think that the strong antibiotic he’s on for the C-Diff, which stays only in your gut, pretty much killed anything that happened to wander into his GI track. The rest of us weren’t as lucky. It was a puking party for days around here. I’m sure mom never realized that when she was coming up to help she would be doing this! And Alec, being three, doesn’t really understand when he’s going to be sick. So we were cleaning up puke in beds, on stairs and in the cars. Good Times…

We had that monster of a storm that dropped 14+ inches on us. I never realized until that day how very stubborn my mom is. She said I must have forgotten my childhood because she's always been this way! Now at least I know where I get it from! When it hit, she said she was going out to help me. I said “no” and that I worried about her knees. We’ll, when I came out from getting geared up, she was dressed and said, “I’m coming out.” And I knew that voice, because I use it so often myself. And I also knew that there was no arguing with her…this wasn’t a discussion. So, out she went and she’s a workhorse! She was shoveling like a maniac and went back out and helped me do it two more times. She also helped me dig out the mini-van when it got stuck in our driveway the next morning and ended up face planting in the snow when the mini-van became unstuck. So, you would have to ask her, but I think she’s had her fill of snow and puking.

We also had a broken sewage line, which intern involved large machinery, plumbers and the excavation of a 10’ hole in our front yard. Good times! The sewage line looked like a log from what I hear. We have an adorable old bungalow and at some point in the last 90 some odd years, the pipe shifted and cracked. And over time slowly filled with little tendrils of roots. So, the pipe became completely filled with roots…which intern backed up our sewer line. Thankfully my mom happened to notice a small puddle of water forming in the basement in one of her many stints down there doing laundry, and we were able to nip it in the butt before our basement completely flooded. So, with that pricey little adventure behind us…we now have a fully functioning water system once again.

As for David, he’s doing phenomenal. We’ve meet with his Neuro-surgeon numerous times, his Neuro-Oncologist and his Radiologist and we now have treatment plan…Huzzah! David will be beginning his Chemo treatments of Irinotecan and Avastin on Friday. This was the treatment plan I had discussed in my February 19th post.

As for me, I’ve have had a tough go of it the last couple months. Our life changed irreparably a year and half ago…and it has been in total utter chaos for the last seven months. And through all of this, I’ve discovered that one cannot continue in “fright or flight” mode indefinitely. Running on adrenaline continually has begun to take its toll on my body and I’m starting to get a little frazzled around the edges. I’ve lost weight, which isn’t a bad thing, but probably not the way I should have. I was working on an ulcer it seems...big shocker?! So, my doctor put me on something which reduces acid production. The stomach pains I was starting to have all too frequently have disappeared, so at least we caught it in time before I had a full-blown ulcer. I'm trying to take better care of myself. I won't be any good to anyone, let alone myself if I keep up at this pace. I don't know how I'm going to do it...but I'm going to need to start slowing down a bit, taking better care of myself, resting when I get moments and accepting the help of our friends and family...because I need to be able to take care of the boys and I can't do that if I am falling apart as well.

We've definitely had better times...but we've also had much worse times. So, we'll get through this like we always do and hopefully we're on the upswing!

Sunday, March 09, 2008

David amazes and inspires…once again…

It’s been a week since David’s surgery and the whole event seems so surreal. Last Monday David went in for the resection of his brain tumor. It was one of the best as well as one of the worst surgeries he has ever had.

We spent the night before doing what is becoming a tradition before a “planned” surgery. Depressing that we’ve begun a tradition each night before David goes under, but at least we’re doing something. We’re not just sitting at home crying and waiting for the world to end. We’re enjoying life and each other.

So, my mom watches Alec…and David and I go out for a drive. We drive for hours and just play music and chat. There is some talk of the surgery, our fears and the many unknowns that lay before us. But there is a lot more talk of what we will do in the coming months and years. We talk about life and where we’ve been. We reminisce and we also talk about the future. We talk about art, our son, and home renovation projects we can’t wait to begin. We talk about life after Cancer. It is a wonderful time and we listen to all of our favorite songs. Music has always had a rejuvenating effect on us, and we find playing all of this great music just pumps us up for the upcoming chaos. We go to bed feeling a bit more lighthearted and ready to face the next day.

And face it we did. David went in early Monday morning. Once they got the initial MRI done and got him prepped and sent into the surgery waiting area, I went over to the family center where I began the hellish task of waiting. They ended up giving us a huge room because they remembered us. You know you’ve been there way too often when the people at the family center actually remember you. But they gave us a room that isn’t usually assigned to families waiting for news from the surgeries because my group tends to be so large, they really didn’t know where else to put us! There was a constant stream of friends and it helped to pass the time away.

David was supposed to have a 4.5 hour surgery. We got the initial call from the nurse in the OR that he went under splendidly and everything was going well. An hour and 45 minutes into the surgery we got another call from the same nurse saying the doctor was done and he would be coming down to explain the how the surgery had gone in a few minutes. My heart stopped. It was 2 hours and 15 minutes earlier than expected and she hadn’t said it went well. Last June the nurse had said the surgery had gone great and the doctor would be down shortly. I couldn’t breath and the world seemed to stop. The room went silent as we all just sat there looking at that damn clock. The minutes dragged by and I swear my heart was pounding so hard it was going to rip my chest apart. It was the only thing I could hear. I’ve never experienced anything like it. It was like this loud hammer reverberating through my chest. I found out later that I was taking deep ragged breaths and probably hyperventilating a bit. I’ve never felt such utter fear. I kept waiting for the door to open and for them to say we had lost him or that the surgery had gone horribly wrong. But they didn’t.

The doctor came in and he looked haggard. My heart dropped and he quickly said that David was ok and the surgery went well. But it was a tough one. He also told us that although the surgery went well, we would have to wait a couple hours until David woke up to make sure everything was ok. They had been mucking around with some major blood vessels up there and there were some very real concerns. He then leaned over and gave me a hug, which surprised me. Surgeons tend not to get too emotionally involved…I think they have to…to survive. But I also know this surgeon has gotten quite attached to David. And that fact that he is so young and has a wife and child, and the fact that David is so damn likeable and so damn optimistic…I get the feeling the surgeon has decided that he will do whatever he can to help David survive this. It’s become personal.

But David woke up and was doing phenomenal…and we all breathed a sigh of relief. But I have since learned from the surgeon that it was more that a tough surgery. We’ve had this surgeon before and he’s always been confident and upbeat. Surgeons have to be to do what they do. They know they can do it, because they’re that good! At least that’s the attitude they have to have to be so good at what they do. And David’s is one of the best in the country when it comes to these nasty little bastards. Everyone is amazed when we tell them who our surgeon is and say that we are so very lucky to have him because he’s the best. And I believe it. I think if we had had any other surgeon; Monday’s outcome may very well have gone very different. Because this man, who’s considered one of the best, said it was an extremely difficult surgery. He joked that David had “taken him down…but that he was back!” They had an extremely tough time removing the tumor because it was very solid. This is neither here nor there concerning the Cancer element, but concerning the removal of it…it is quite important. It makes it much harder to get out because there is so little play as well as they can’t move and shift it to get at the blood vessels. Thankfully, this little mother didn’t have very many vessels at all, but it was attached to the major blood vessels in David’s brain.

So, they were able to remove most of the tumor, but had to leave little bits of it wrapped around the blood vessels, because to remove those would have killed him. They placed in the balloon that was to have radiation at a later date and sealed him up. Although the surgery was completed, there was a very real concern that David would have had some major strokes because of all the crap they did with those major blood vessels. But he woke up and looked me in the eyes and smiled. And my heart ached with relief. When he tried to speak, there was weakness and drooping on the left side of his face and his speech was slurred. I kind of freaked out, but the nurses said that he didn’t have a stroke. They can check for that sort of thing on MRI’s. But that it was most likely a reaction from the swelling of his brain or that there had been a little damage during the surgery and it would be permanent. And we had to wait once again. He was fine neurologically and his motor skills were great, he just had that slur. It was the exact same symptoms as he had had last October when he had begun hemorrhaging and had that seizure, but the symptoms began to fade by the next morning and within 24 hours they were almost all but gone.

Dave was out of ICU in less than 24 hours, which is a record, and into a normal room and raising hell with the nursing staff and dieticians who actually remembered him from previous stays. They all love him of course! David was up and moving within 30 hours and taking little walks around his wing. The physical therapists couldn’t believe it. The doctor came in smiling and told us David was a strong man. I think David even amazes the surgeon. They’ve never seen anything like it.

It’s been a crazy roller coaster ride and the ride hasn’t stopped yet. We have now learned that we won’t be doing the balloon treatment because when he hemorrhaged last fall, a few cancer cells ended up above the tumor site. This isn’t awful news…but it’s still not good. I think the surgeon has much more immediate concerns about the tumor site than a few stray cells, but this means that the balloon won’t hit those cells. And they can’t do this form of treatment unless they are sure they are able to cover the entire site…so it is no longer a viable treatment. The balloon will stay in and David is a bit bummed about that. It’s left a lump on his otherwise lovely shaped head. But, as we keep reminding ourselves…it really is nothing considering how well he’s doing. So, in keeping with firsts…they released David in less than 2 1/2 days after major brain surgery. He was healing well and they knew he would take extreme care of himself at home…and I watch him like a hawk. And they were more concerned about him catching something else, which could be debilitating at this point. So off he went. Crazy…

Tuesday we will meet with the Neuro-Oncologist, Radiologist and Surgeon to discuss our next path. They all have ideas and David has an entire tumor board that is watching over his case as well. He’s made connections with many of these doctors and put it on much more of a personal level I think. He’s not just a patient anymore…but also a man with hopes and dreams. And I believe they will do everything in their power to give him a chance to make those come hopes and dreams come true. We may end up doing the Chemo plan I had discussed previously, before they decided on the balloon. Or there is also some discussion on doing some sort of new, low pulse radiation therapy. I guess we’ll just have to see…

But, I think we came very close to loosing David last Monday. Closer that I really want to think about honestly. But we didn’t. And every day we are grateful for the day and the precious moments we share. Life is too short people and too precious. I’ve always felt this…and in the last year and half David and I have begun to worry less about the stupid stuff and enjoy life’s simple pleasures. But I feel like we turned yet another corner on Monday. It was a not altogether gentle reminder of how messed up this situation is and how very dangerous it can be. But I don’t think it’s made us any more weary or scared than we were before. But I do think it’s reminded us to really enjoy life. Why put off going outside to play or taking a walk in the rain or making that piece of art…the errands will always be there. The house and all it’s mess will always be there. But Alec won’t be 3 forever…so we should enjoy these moments. Tantrums and all! Because life is moving along at a brisk pace and it’s all we can do to keep up with it.

So, we’re trying to worry less and less about the mundane stuff…because it will always be there and we’ll get it done eventually. But if a moment presents itself. A friend stops over. An unrealized art piece keeps nagging at our thoughts. It’s a beautiful day for a walk or a drive or whatever. Then do it. Because no matter how shitty this situation is, it could be worse and we are so very lucky to be where we are right now. And I am so very blessed to have such an amazing person in my life…to be sharing my life with best friend and my soul mate.

Saturday, March 01, 2008

Our love will chase the clouds away…

I just came across a mix tape that David had made for me way back when we were dating in 1993 (I can't believe that was 15 years ago!)

I absolutely loved this song then and what it had to say. Ironically, it is more apt now that it was then. Strange how life leads us down different paths than we expected to take. But I know this; our love will chase the clouds away.

Hope you enjoy the song…
But be takes awhile to load.